It’s a major challenge to remain present despite the feelings of despair about all my worsening symptoms and lack of options that I am staring down. At the same time I’m always trying to figure out more and more about living inside my energy envelope and enduring the chronic pain, the lack of predictability, the severity and suddenness that my symptoms frequently come on.

Fortunately, a louder part of me than the despair knows that it’s important to grow and learn from this never-ending flareup, otherwise I am just surviving hour to hour, living in fear, and that isn’t enough for me. I’m greedy.

I want to get to a better place so I can really live again, within my limitations. So I can make my mark, however that is possible. It has to be possible. Everything is so hard now, but I know who I am, and I know who my friends are. I’m stronger than ever in some ways, and I am learning to forgive myself for the weaker parts.

Even when all I can do is breathe, it helps to remember that just being alive is amazing and improbable. I am so grateful for days when I am capable of seeing past the storms overhead. It’s okay that I can’t do that every day, because I’m doing my best.

Thank you for sharing!

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I hesitate to admit this, but it’s important. Before i got sick I was already pretending to be normal, pretending to be happy and productive and on some sort of trajectory, but I was just as lost as I am now. I have been dealing with severe anxiety disorders my entire life, ADHD, obsessive behaviors too numerous to list, occasional bouts of treatment resistant depression, insomnia, self-injury, severely restricted eating or binge eating depending on the year, as well as growing up with chronic pain to a much lesser degree than now in the form of frequent dislocations/subluxations, migraines, and dizziness/nausea, all of which went untreated for a long time, or treated but not correctly.

Now that I have a series of chronic illnesses/conditions, my mental health is under the microscope constantly. It has been enlightening but also terrifying. Not being able to hide my mental health or my physical health anymore is the part I’m still trying to accept. I’m used to being miserable to a degree and pushing through, always pushing through, and to have my body take that ability away from me has caused some serious grieving.

The thing I was most commended for other than my test scores was my ability to pretend like I wasn’t hurting while I was, both physically and mentally. All of the bits and pieces that make me my own person are also things that drew negative attention when I was younger, and I have trouble getting over that still.

My response to the negative attention, eventually, was to reinvent myself to be as normal as possible, as plain as possible, to not stand out too much, and to deny my artsy, nerdy, angsty side the freedom it wanted. Now I’m left with artsy, nerdy, angsty as things I need to learn to be proud of and to embrace again. I want to, I really do.

Those parts of me which long for the freedom to reinvent myself into the person I really am are winning. My hair is teal, my clothes are whatever the hell I feel like, I have been writing more honestly and openly, and I have picked up a paintbrush again.

So the path is there, I know what I need to do, but I’m scared to be myself again. For so long I’ve been this average-intelligence, straight, workaholic, brown-haired, plain-clothed girl who kept the ugliness and the oddness to herself, absolutely devoid of the desire to write the darkness inside of me or to paint it, only allowing thoughts out through a careful filter, and calling that happiness. It wasn’t. Neither was it sadness, exactly. I was just going in the wrong direction.

The reality is that my careful filter is broken now and only works in fits and starts… I can’t be anyone other than the person I have always been underneath the normal life I was trying to build around me like armor. I still love the interests I have cultivated while lost and wandering through life; I still love to garden, bake, and make my own home and beauty products. I absolutely still love my boyfriend, as well as this house and our cat. This is simply my soul wanting me to unleash it in any way possible in my new life, with my new limitations. I need to find a purpose, yes, but I also need to find myself again, be kind to myself instead of denying myself the freedom to be weird and potentially wonderful. So much anxiety must be tied up in the act of pretending not to be excited about the things that truly make me happy.

I don’t fully know what my happiness will look like now, but it will look different than the one I pretended was right for me.

To be honest, I’m relieved.

There are parts of me that are stronger than ever, and then obviously there are parts of me that are so weak that they have stolen life and time from me. But I am a survivor. This is me surviving. It might not be pretty, the struggle can get ugly and mean in an instant, but I have always survived, and I will continue to do my best. That will have to be enough.

I’m not any less okay than I was yesterday or the day before, I am simply not willing to pretend to be better or different than I feel. Some days I am still a suicidal teenager and some days I am a sage adult, and many days I bounce back and forth between the two. However, both are okay, both are me, and I am always going to be a survivor, even when I have no idea what else I am.

The term survivor implies that someone came through or currently resides in hell, however, and that is the part that people seem to forget. The struggle is what breaks you, but it is also what rebuilds you. We cannot be the same after we travel through nightmares turned reality.

Not the same, but certainly still me.

I am just too exhausted to draw a silver lining on my clouds today. Today it’s okay to acknowledge the storm overhead. To be soaked in it and shivering and afraid of the power behind it, but to remember that the sun also exists, just beyond those clouds.

Thank you for sharing!

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Right now, I will do something very small and have to sit down immediately after or during a slightly more rigorous task, and it’s not the pain that’s knocking me down so hard, although there is a lot of that, I’m just pretty damn exhausted. Like, my bones are way too tired to walk to the mailbox or make it down the stairs to the garden, but I’m still able to fight through and manage those things sometimes. It’s very confusing. Overall though, the fatigue has ramped up to a point where I’m scared a little.

This is not meant to be a bid for sympathy or anything, I just have to have a place to put all this down and get it out of me. My body won’t allow me to do much of anything else and even writing has me fading in and out of consciousness because it leaves me so fatigued. To be completely honest, I’ve been feeling a lot worse lately. I pushed myself trying to create a small business that was never going to happen, and in many other areas of my life, and none of my accomplishments have added up to anything lately, not even one completely clean room. I have learned a lot and there were tiny moments of excitement and victory, but that isn’t anything I can put on my resume, really.

It’s depressing to feel like your health is going in the opposite direction that you’re aiming for. A lot of us are familiar with that feeling though, unfortunately. It’s just another part of chronic illness unless you can find a treatment that works. For a while things will hold steady symptom wise, and then a cluster of new ones will pop up one after another, which is what has been happening recently. Not every single new symptom stays around long-term, some of them will just last the length of this particular flare up, and some of them will attach themselves to my illness and they will be added on top of my daily already unmanageable pain, fatigue, and bodily systems that are completely out of whack. But these new symptoms will not be so courteous as to show up clearly on a test. Just abnormalities here and there, nothing to make an easy diagnosis off of. It makes my head spin trying to get a clear grasp on even the list of weird things that have happened with my body, and a lot of it isn’t stuff I feel comfortable sharing.

This flare up has brought with it a bout of sleep paralysis episodes, limb tremors and increasing muscle weakness, much worse than usual chest pain, rib dislocations, absolutely unpredictable new headaches and some severe migraines that actually got the better of me and landed me lying down until they subsided, hip subluxations on both sides, knee instability and weakness, poor typing and speech, including mixing up words, writing something completely different from what I was intending or thinking I was writing, forgetting phrases and words, increased inability to finish a sentence because I can’t remember why I started it, using big words but forgetting all the small ones, dizziness, trigeminal neuralgia attacks that feel like being struck with lightning over and over again in the same spots on my face, occipital neuralgia that is like being chiseled into on the back of my head, or like someone is grinding a screwdriver as hard and slow as possible into my occipital nerve, tmj issues making it a challenge to eat/smile/talk too much, jaw dislocations hundreds of times a day, lack of coordination and hand dexterity as well as random violent spasming when I try too hard to control my muscles for extended tasks like painting and typing, really painful joints all over, fatigue so heavy I feel like my veins are full of lead and my muscles are made of tissue paper and my bones are filled with cement, GI issues which all of a sudden include throwing up just about every other day, and delayed stomach emptying with all the associated nausea and pain and hating food/food hating me, possibly gastroparesis but I’m hoping not, problems associated with migraineurs even when the really severe head pain is not present (olfactory hallucinations, auditory hallucinations, light/sound/smell sensitivity, big blurry spots or color spots in my vision, things that look like shiny, constantly moving sprinkles all over my field of view, thinking things are moving when they aren’t, as well as not being able to track movement very well), falling asleep suddenly after exertion with no warning, feeling like I’m walking on razorblades and broken glass, sudden moodswings mixed with lots of feeling hopeless or just numb and dissociated from my disobedient body, muscle cramping, brainfog that is stronger by far than my Ritalin prescription, not understanding what people are saying unless they repeat themselves a few times, some obsessive behaviors I cannot stop doing and ptsd flashbacks, skin that hurts like thousands and thousands of nettle stings, and just so much more, but it would take so long to list, and this is why seeing a doctor once every 3-6 months is totally and completely unhelpful.

And I’ve been like this for two and a half weeks now, and it keeps dropping new surprises on me so I’ve got no idea when it will let me go…

I lost 15 pounds, and that was startling and positive. Not sure why I was so startled, I think it’s hard for me to notice the healthy changes I make and pat myself on the back unless some kind of tangible progress comes out of it, but lately I actually have noticed myself doing better at picking the salad from the garden over chips or pasta on the side, I’ve been back into yoga in bed, and in my better moments I try to sneak tiny bits of yoga into my day, with my arms close to my body and not pushing my flexibility to it’s max because I’m not in that kind of shape and my body can and will bend too far in every direction if I don’t watch myself in a mirror while I do it.

I’m so exhausted that it makes me laugh that I’m adding yoga back into my days but I can’t shower more than once every five days. Priorities slightly skewed? I don’t know, a shower is one very big expenditure of spoons that you’re committed to once you start, and yoga I can stop any time it hurts me, I can modify it to hurt less or not at all and to be done lying down even, and I dole out spoons one at a time to each little micro-session which is much less punishing on my body than taking a shower. God I miss being able to do that every day. The stupid shit we take for granted when we are healthy, I was so greedy taking two or three a day during sports and summer or just to get warm in the winter, and I never imagined I would ever give up my obsession with being sparkly clean every single day. It hurts to think about stuff like that though, and in general I just try to accept that things are the way they are and not ask “why me?” too much.

Not being able to shower is a big gauge for how much of a toll this has taken on me. The things I would have never given up if I had a choice, the gardening every day and walking for hours, the freedom of driving and earning a paycheck even if I didn’t enjoy the job or the commute sometimes, my clean house, the freedom to work out or go out with friends whenever the mood hit me, frequently visiting vintage shopping and buying fancy coffees just to treat myself, painting whenever I had a creative idea come into my head, preserving and cooking food especially when it came from my garden, baking bread almost every day, fashion, being able to complete deadlines and not be a total flake, being able to plan my next day and stick to it,

I feel bad enough on a daily basis that younger me, who had a damn high pain tolerance, would have been asking to go to a doctor almost every morning. But I don’t go even when it gets to be unbearable, because it’s so discouraging to be told more than once every 3-6 months that there is nothing new to try, nothing else to do that is in my price range, nothing, nothing, nothing, and to be treated like a drug seeker, a whiner, a lazy kid who can’t be bothered to get a job, when I just want to get better. I just want some hope, some kind of a future to plan on and look forward to. I don’t want to have to take these drugs. I don’t want to have to take two sparse and precious oxycodone just to get through taking a shower. This is not something I constructed to get out of working. I miss working. I’m young, my ability to work was my future and now I’m very lost.

I’m reaching for that point towards acceptance of my illnesses and new life where I can start to explore my talents and try to find more solutions, more small improvements, more joy in my life. I feel like it’s both close enough to grab and pull closer and simultaneously so far away that I fear I just can’t get there. I know I can only take it one day at a time and keep looking for the small victories, the shiny bits and the lessons learned no matter how painful, so I can quietly celebrate my life for those wonderful things amidst the chronic fatigue and pain.

Like this:

“Disability doesn’t make you exceptional,but questioning what you think you know about it does.” – Stella Young

The danger of being viewed through the lense of the “inspiring cripple” archetype is that it was created by ableists as a tool used to invalidate those who are struggling. It means that people expect things from you that you weren’t even capable of before disability, muchless after. It’s such an unhealthy way of approaching people who are ill, as if we are not trying hard enough unless we can plaster a fake smile on our face and say we’re doing well, when actually we are struggling in ways that only a small percentage of the population can understand. The notion of the inspiring cripple does not leave room for the uncensored reality of the chronic illness spectrum.

If you are able-bodied and do not experience mental illness, I am not your inspiration. If something I say or write is helpful to another spoonie, then that is why I am here and it makes me happy to be helpful whenever possible, but I don’t want ableist individuals thinking that my refusal to cry in a corner every day makes me somehow better at being sick than someone who can’t stop sobbing and wishing for death. I am not any better.

I am not “trying harder” than anyone else and I will not be used to shame someone who feels like they can’t handle their condition. I still feel like I can’t handle being chronically ill on a regular basis.

I am not your feel-good story. I am a deeply flawed human being with constant, unrelenting chronic pain and many other debilitating conditions and symptoms, too. My choices are give up and die, or keep trying to find a reason to wake up and to put food in my mouth once a day. Sometimes that is a genuine struggle. Sometimes I do not get out of bed, and I do not put food in my body, and that does not make me pathetic or weak, it makes me sick. I have good days and bad days and I have given myself permission to have both.

I am so very tired of inspiration porn, aimed at the general public and unapologetically using those who are physically disabled, suffer chronic pain, or live with mental illness and/or neurodivergence. Inspiration porn wants you to say “well, it could be worse, I could be that poor person in a wheelchair or that teenager with a cane, therefore I’m not allowed to feel shitty, ever.”

Bull. Shit.

I am happy to answer any and all genuine questions about my life, my coping strategy, my illnesses, or anything else that someone is interested in, provided that the person asking is not just going to use my answers against me later. I am not interested in answering questions that are actually just thinly-veiled judgemental commentary on how I deal with my pain and other symptoms. I wish that my abled friends could just acknowledge that my reality is not something you can comprehend if you don’t live every second of every day in pain, knowing that the pain is life-long or progressive.

If you are not sick in a long-term sense, please try to understand why you cannot compare my life-altering, completely debilitating daily pain to the last time you had the flu, or the time you broke your arm, or even the car accident you were in, unless one of those things resulted in a long-term illness, disability, or chronic pain disorder. Flus, broken bones, and car accidents may be unpleasant, but after some healing your life resumed as planned, so you have no idea what it is like to live in my body, the body that has caused me to slowly, against my will, forget all my dreams and plans for the future. Please realize that every pain is experienced differently and is unique to each individual who is suffering. Comparison of one disabled person to another person, disabled or not, is never okay. We are not brave for the things healthy people think we are brave for. We are not brave for simply existing, we are not brave for going about our day as normally as we possibly can. Attitude does not differentiate a “good” cripple from a “bad” cripple. Inspiration porn is pure victim blaming, and society has unfortunately picked up this nasty habit.

Ableist propaganda would have us think that if we are not using our illness to transform ourselves into an inspiration, we are just wasting space and burdening those around us. Do not buy into that trash! I am sorry for each and every person who has ever felt like their pain or illness is the punchline to an ableist joke. Those of us who are ill are allowed to make jokes, we are allowed to seek out the humor in our situation, and it is despicable that people would use that coping mechanism against us. Yes, I use sarcasm to cope. Yes, I use humor to cope. No, that does not mean I’m cured or experiencing less pain or “getting better at dealing with it” as so many have said to me. It means that if I don’t laugh about this, it will crush me.

My medical decisions are not up for discussion unless you are another spoonie, and even then, I retain the freedom to completely ignore any and all medical advice that doesn’t come from my doctors. I even retain the right to ignore medical advice from doctors that does not make sense or goes against my beliefs.

I certainly won’t be basing my medical decisions off of an abled friend’s (ex-friend’s) suggestion because they feel like they have “observed my pain” (read: been annoyed by how much I talk about it) for long enough that they are unreasonably comfortable making sweeping declarations about my use of medication, or with stating that I “pity myself” (read: retreat from overwhelming and triggering situations so I can take care of myself appropriately) sometimes. Fuck yeah, I do pity myself sometimes. I refuse to apologize for that.

The abled seem to possess an unlimited capacity to confuse my online and in-person honesty and unwillingness to sugar-coat reality with what they view as pity-seeking behavior and weakness. Saying I have an incurable illness is not pitying myself, it is the truth. I am allowed to speak the truth, my truth, and I am allowed to remark at the depressing reality of chronic pain. Ableism makes accepting the reality of our illness that much more difficult. If I said I never have moments of self-pity I would be lying, and that helps no one. I have every right to be upset about my conditions and to grieve over the losses in my life as a result. And so do other spoonies at any point in their journey.

It is just grotesque that there are people self-righteously using those of us struggling with mental illness, cancer, or chronic invisible illness (to name a few) as their motivation, or to shame others with similar struggles. I don’t want my accomplishments to ever be used to make someone feel inadequate.

The myths that are perpetuated by inspiration porn make it harder to be honest about what we as spoonies experience, which is why it’s time to start calling ableism out wherever and whenever we see it. Just because one person with MS can work a full time job does not mean that another MS patient is faking their inability to work. It’s such a simple thing, to validate someone, yet we don’t do it enough.

You wouldn’t worry about being polite when calling out racism or homophobia, so why would you worry about offending people when you call out their discriminatory attitudes towards chronic illness, disability, neurodivergence, mental illness, and chronic pain?

Thank you for sharing!

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But I have (mostly) managed to keep up, which is no small thing to me at all! With all the pushing myself I’ve been doing, I’m ready for the much needed rest I will be taking starting today.

This week has been action-packed for me, although for a healthy person it certainly doesn’t sound like much. I got to spend a whole day out of the house at my mom’s wedding reception, and then made it all the way to the teaching hospital and back two days later with her help, and then on a very short grocery shopping trip later that night with my boyfriend (where I was so out of it that I bought pretty much only chocolate, hahahaha). Two days later we made smoked pulled pork, homemade macaroni salad, and dinner rolls from scratch (all incredibly cheap but incredibly perfect for sharing with a crowd, which we have gotten smarter about now that we are super broke!). We took the food all the way from our house to the part of Oregon I grew up in, which is about an hour drive, and I did not collapse or fall asleep somewhere during that trip last night, but I had to sit out the games because of how unstable my joints are and how bad my head and neck are already hurting. I have been using the preemptive rest method to gain some strength ahead of events I know are going to sap me of energy or take a great deal of time and probably a bout of extra pain to recover from. It’s difficult to recover from that much activity while I am still steadily decreasing my dosage of Lyrica (down to 1x 75mg pill per 36 hours!!!), but I will recover. It will take a while, but I had fun this week and saw my mom and even my extended family, so it’s worth it!

Resting consciously, including not overdoing it mentally and avoiding sensory overload, has really helped me this month, but it has meant that I cannot do nearly as many things as I would usually force my body to do, especially when it comes to gardening and housework.

The next step which I will start along with the rest is adding more stretching and walking for five to ten minutes at a time back into my schedule, but seriously every part of my legs hurt right now, my feet feel bruised from standing yesterday, and my knees are throbbing, none of my joints want to stay in their sockets and none of my muscles want to help them out.

I had a pretty extreme limb tremor last night in my right leg that lasted for almost twenty minutes, and that twenty minutes of having a rapidly spasming/twitching/bouncing leg has left even my fingers exhausted and all my joints stiff from trying to force my muscles to relax and stop freaking out, which ironically made me tighten up even more throughout my entire body. The tremors aren’t really painful or a problem in and of themselves, they are just not my favorite to deal with in public, and it does make my leg prone to giving out on me if I have to walk while it’s happening.

My real problem is my mouth, I have severely swollen gums and an impacted molar on my right side as well. I have an unusually small mouth and have no idea how I never needed braces growing up, but my teeth have always been very straight with no gaps and only some flouride damage to deal with. In the last several years, things are different, and the overcrowding is causing problems left and right, and could even be contributing to my TMJ disorder, migraines, and neck pain. I don’t even have enough room for all my normal molars to come in, so I have been dealing with the pain of teething for as long as I can remember. I not only need my wisdom teeth removed (holy hell, I need them gone so badly), but I also need some of my molars to be taken too, especially this very swollen and impacted one that has finally poked most of the way through my gum but is now pushing the molars in front of it sideways. Getting all those teeth out may even help with the severity of my jaw clenching issues, which when tested at PT have ranged between 7x and 30x more tense than an average person’s jaw, and that was while using every last relaxation technique and cognitive behavioral therapy.

The challenge will be finding someone who is skilled at dealing with patients with severe TMJ, and then I magically have to be able to afford it. The jaw pain has been getting worse and worse, and to have an impacted or worse molar is excruciating, especially that close to all those sensitive nerves in the back of my jaw. I’m used to my face hurting pretty awfully because of Trigeminal Neuralgia, so I am able to tough it out most of the time but sometimes I just want to rip my teeth out myself they hurt so badly. Now is one of those times. It’s even affecting my ear on that side.

To make my time eating even more fun, because TMJ disorder and dislocations and messed up teeth weren’t enough, in the last month or so I have developed some awful and nearly constant food allergy reactions. I have sores on my tongue and a sore throat that never fully goes away, and my lymph nodes are angry at me after every meal. I only eat once a day, and I have cut out a bunch of foods including all acidic fruits (goodbye homemade marinara sauce, goodbye morning smoothie, you were nice while you lasted) and anything with vinegar (goodbye kombucha and all my favorite homemade salad dressings), beer/cider, yogurt and sour cream; seriously so many things are gone from my diet, that’s not even close to the list!!! And even cutting all this stuff out, I’m still having issues every day with these horrible sores on my tongue and throat. I obviously need an allergist as well as a dentist at this point, but I can’t afford it with my insurance deductible not being met yet.

Basically my mouth is full of fire and I have no appetite and I am having trouble eating even when I want to, so maybe I will finally be losing some weight until I can see a few doctors? That’s the most optimistic thing I can think of right now, because seriously, this sucks. I need medical help. I have needed it several times in the last month and not been able to go because I simply owe too much money to everyone after three years of not being able to pay my bills. There is no hope for money coming in, and I am just in too much pain to brainstorm ideas or set up a kickstarter or re-apply for disability again. Blegh, so instead of thinking about any of it, I’m gonna go back to resting and reading. I am way too overwhelmed, and I know part of that is just sheer exhaustion and needing to recover from the constant setbacks of over-activity every few days for the last week and a half. I will regroup and hopefully have a plan of attack… although right now I’m very much stumped.

Days have been slipping past at alarming speed, and I’m constantly confused about what day/time it is and even where I am, but I’m learning to let go, or at least I’m trying to learn. Right now all my body needs is for me to respect it, listen to it, and try to figure out what the hell I’m allergic to on my own. Worrying about my memory is just going to stress me out even more.

On a lighter note, my psychiatrist says I am making progress lately, and that fills me with hope and even a little pride and self-love. She also complimented me on my skin and hair, which I really have been taking much better care of now that I’m using a homemade grape seed oil, baking soda, dead sea salt and epsom salt scrub with calendula petals from my garden. Grape seed oil is the queen of all lightweight skin moisturizers for sensitive and/or oily skin, and no weird reaction after I put it on like when I use any store bought lotion, no matter how “organic” or skin-friendly. I get a 16 oz bottle for $7 using the Amazon subscribe and save program, I really like this one from NOW Foods:

For my hair I made up a dry shampoo in about 30 seconds from equal parts bentonite green clay, indian red clay, and arrowroot powder, and it helps keep my ridiculously long locks from tangling, or looking limp and lifeless between showers. My scalp seems to really appreciate it, too. I love having both recipes on hand, but it would still be nice if I could shower more than once every three or four days. Working on that, though. I think if I just get a big fluffy bathrobe and put it on as soon as I get out of the tub and go lie down for fifteen minutes, I would probably be dry by then, and maybe saving the energy on drying off would allow me to get clean more often. Oh, spoonie problems. I’m past the point of pretending now. I’ve realized it’s entirely necessary that I make some changes to my lifestyle in order to retain what independance I have. Ignoring things that would make my life easier is no longer an option. Now it’s just a matter of finding enough money to make the modifications I need, and figuring out what actually helps me live a better life.

All I have kept down today is coffee, water, and crystallized ginger, and barely on all three. Even the ginger can’t save me from this nausea, pain, and extreme fatigue, coupled with dizziness and eye issues. See, I tried to be positive and distract myself from the reality of chronic illness, but then I took it right back to how bad I feel because it’s literally all I can focus on right now. I’m just getting through one hour at a time right now until my body catches up. I know others can sympathize with that sentiment, but I would never wish it on anyone. Nobody should have to understand, because no one should have to deal with this all the time.

Like this:

I just received Toni Bernhart’s ‘How To Be Sick’ from my mom while she is visiting Portland for a week, and I’m super excited to read this one, but holding it in my hands made me realize how much I read about chronic illness online and how weird it is that I have never picked up a single book about it the entire time I have been ill. That is odd, right? I used to read a book a day, for about a decade between 3rd grade and the middle of high school, and then suddenly reading and I broke up. I also broke up with writing at that time, and didn’t look back except with nostalgia and faint longing to be able to sit down and pour everything I wanted to say out on a few pages and be free from it. I’m not really sure what happened, if I just lost faith in my intelligence and abilities, if I wanted to focus on other things creatively, or if it’s because I started working and suddenly reading and creativity both were not as important as before.

For whatever reason, it’s been a long time since I’ve read more than a book a month (even less lately), although I read voraciously online and peruse a wide variety of articles from scientific journals to nonfiction, self help to romance, blogs to buzzfeed, human interest stories to medical news, campaigns and conspiracy theories. You name it, I probably stumble across it and get sucked into reading about it all day long at least once every few months.

Since I read every day online, I figured maybe part of my self care routine and something to help recharge my creativity could be to set aside just ten minutes at first each day to read printed media, more if I care to (and I usually do). It’s been interesting because most of the books I have picked up to re-read from my extra-super-nerdy childhood do not interest me, except the books about space and quantum physics, and the collection of beat poets and writers I still love so very much. I have made a promise to myself to buy a book a month from now on, and the next one is Milk and Honey by Rupi Kaur, but after that I have no idea!

Right now, I’m looking for books that focus on similar themes to ‘How To Be Sick’, especially the mindfulness aspect, but also things that may appeal to caretakers and are eye-opening or have been life-changing for ya’ll.

I you can think of any books that have particularly helped you on your journey, or that have spoken to your as a caretaker, I would love to get suggestions for my next read after ‘How To Be Sick’.

Hopefully I will be able to update more frequently in the next few weeks and read more blogs, both things I have been seriously neglecting. I have some new paintings to share, and they’re not extravagant or anything to get too excited about, but it just feels good to be creating something, no matter how small or simple.

Like this:

I would like to take a moment to recognize that February 28th is Rare Disease Day.

The name implies that not that many people are affected, but that’s a totally false assumption. There are way more of us than you would ever guess! Many of these diseases are so rare that physicians do not know how to test for them, would not recognize the symptoms, or take adequate steps to obtain diagnosis. There is only room for a certain amount of information in each person’s head, and I’m not implying doctors aren’t doing their job, just that there are probably many more who live with rare diseases than are currently counted on the tally, which is already estimated at well over 300 million worldwide. I live with rare disease, I know many who do as well, and let me tell you, a rare disease is a special kind of hell burden. Doctors think you’re crazy for even bringing up genetic testing, they think you’re a hypochondriac if you tell them what your symptoms and odd blood tests match from all your painstaking research, which if you have a rare disease, you absolutely have to do, and they scoff at the mention of names they’ve only briefly skimmed in texts and never seen in real life.

My rare diseases are ones that are actually fairly well-known, though doctors usually don’t know much beyond a one sentence summary (if I’m lucky), so finding proper treatment or even a specialist with a depth of knowledge on them is difficult. My path to finding a diagnosis is not over yet, and what I have managed to find out has been like pulling teeth. I know I’m one of the lucky ones just learning as much as I have so far.

When I first gathered the courage and research needed to talk to a doctor about Ehler-Danlos Syndrome, her immediate reaction was to call me fat. Yes, really. She looked at me, puzzled, and said, “Isn’t that a disease for tall and thin people?” and I had to bite my tongue, hard. I also had to accept that she was not going to help me with this. Not now, and not ever. She simply thought I was nuts, even though I match 100% of both diagnostic criteria. It was humiliating, I felt lower than dirt and like maybe she was right, maybe it was all in my head, I was making this up for attention or so I didn’t have to work anymore. She had me so confused at a difficult time in my life when I didn’t realize that pain affects cognitive abilities, and she definitely abused her position of power as a doctor, numerous times. I started to internalize all her comments about my psychiatric health, personality flaws, and physical unattractiveness. I lost trust in myself completely because I thought I was either dying or a liar, and I couldn’t figure out which one.

Unfortunately for my entire story, really, I was in the middle of a lawsuit with a company whose semi-truck hit me, so I didn’t want to switch doctors, even though she was pretty incompetent and wouldn’t sign off on X-Rays for months after my car accident, not to mention that she made me cry and hate myself and panic for days after every appointment. This doctor often repeated with obvious frustration that there weren’t a lot of options, she didn’t know what else to do for me, and that my panic disorder was obviously the root cause of all my problems, not my car accident. Sigh… there’s much more to my dealings with her, I have a long list of quotes that would make you cringe! But telling me it was all in my head was her favorite. She did it in writing, even.

Nevermind that I had actually been diagnosed with two relatively serious spinal injuries once we started taking X-Rays and MRI’s, and they were dire enough to warrant my two neurosurgeons getting excited and thinking they were going to get to cut into me. Both of them were told politely that for me, back surgery is not for curing pain, it needs to be done for a more compelling reason, or in the case where surgery will stop further degeneration. Neither one of those things is true for me, and neither doctor really believed that they could improve my pain in the long run. They both just wanted to “cut and see”. No. I have enough problems without botched spine surgery! In addition to the torn disc in my lumbar and the one in my cervical spine, there are also a set of birth defects including the Spina Bifida, plus 11 Schmorl’s Nodes (central disc tears that protrude into the vertebrae below), nerve root cysts, a random scarred area of my spine about a centimeter across, height loss and disc desiccation, bulging discs, disc degeneration/arthritis, and best of all, completely unexplained extra cerebrospinal fluid trapped in odd places in my spinal column, even two years after the car accident. I was told that none of that stuff was a big deal, but I beg to differ! At 22 I had more problems with my spine that most people in their 70’s or 80’s. That is not “normal”. As far as figuring out what out of all those issues is causing me pain? I don’t think it even matters at this point, studies have failed time and time again to relate MRI changes of the spine to specific problems. We all seem to experience them differently. Supposedly other people whose spines look like mine can actually function as if nothing is going wrong in there. Good for them. I guess I’m just rare on all accounts!

I sought out the local teaching hospital in desperation, starting at the pain clinic where I was, somehow unbeknownst to me, diagnosed with fibromyalgia, hyperalgesia, allodynia, and neuropathy. Since no one bothered to mention that I had been diagnosed with those things, I was still frantically looking for answers in a myriad of other directions, while waiting two months for my referral to rheumatology, where I finally figured out what was happening to me, or at least found out that I had been right all along to keep pushing, and to not let any MD stigmatize me into silence.

My primary care at that time still didn’t believe that I was in real pain, even after emailing back and forth with my fibro specialist, and I’m pretty sure she thought fibromyalgia was a fake diagnosis. She told me she was sure I didn’t have it even after two specialists diagnosed me months apart, at the most reputable hospital in the state. “Other people have it so much worse, just get over it” (not necessarily as true as she thought it was… I was just very stubborn about hiding how bad it had gotten because it made me seem even crazier). “You’re a smart girl, I don’t understand why you can’t figure this out” (thanks?). “If you would just eat right, this wouldn’t be such a big issue” (Wanna come over to my house and cook healthy every night and watch me throw it up later because many “healthy” foods hate my body? Didn’t think so… I’m doing my best. Food doesn’t cure chronic illnesses, though it does help). “I can’t do anything for your pain, but you should really start taking longer walks” (this was a favorite of hers… infuriating when you are trying to decide if walking to the toilet is even an option right now). “You won’t get better by taking time off work, you just need to try to get through it.” and best of all: “Oh, is that your sympathy cane?” Phew. Right. Because if you can’t see it, you must make the person feel terrible for having it. I struggled through years of increasingly aggravating (more like tortuous) physical therapy and massage, while my other symptoms began to make themselves known and I pushed them away, in denial.

It was all related to panic attacks, I told myself. Calm the fuck down, Jessi, then it will stop.

Except, it didn’t stop, even on a massive dose of 3mg per day of clonazepam, which works out to about 9mg circulating in your system at any given time, more if you’re a slow metabolizer.

I was stuck with that mean, bitchy primary care doctor, throughout the three years of wasting what little energy and brainpower I had on a lawsuit that failed because I was too exhausted, sick and in severe, never-endingpain to focus on seeing it through.

In the end I went into the office of the attorneys who represented the company that hit me, just me and my boyfriend, and I talked them up a couple thousand from the measly couple thousand they offered. I made the attorney I was arguing with leave the room to talk to his boss at least eight times, and after three years of work and hope and being told my case was worth hundreds of thousands because my life had been utterly destroyed by this accident, I was dropped by my lawyer within a month of my court date and told for the first time that the accident didn’t ‘look big enough’ to have ruined my life, and a jury would think I was malingering. I gave up, something in me snapped after three years of putting so much hope into being fairly compensated for what had happened to me on my way to work and all the torture I had endured since, all the tests and all the ER trips and the days spent in woozy pain land.

We closed the case in the enemy’s plush, modern law practice, at the beautiful inlaid table, in the room with soaring glass walls overlooking a rooftop garden and downtown Portland. When the attorney picked up my signature off the table and began to turn his back and walk away, I felt my soul deflating. I had been keeping strict wraps on my panic attacks for months up until that moment, but my body took over right then. It started as a swelling in my chest and a ripping sensation in my throat, and then a noise that sounded more like a dying animal than an upset human tore it’s way loudly out of my lungs. I am not sure how long I sat there and screamed at the top of my lungs, my boyfriend trying to close the curtains while people came up to the glass room like I was a monkey in a zoo, staring in at the girl freaking out for no apparent reason.

What my doctors are starting to understand now, years later, is that I was so affected by the car accident because I was a perfect storm of bad genes, PTSD related scars in my spine and on my brain, and birth defects; a ticking time bomb that exploded when I was hit, and set in motion a cascade of chronic illnesses.

Ehler-Danlos Syndrome is congenital, and it often comes along with a host of other rare conditions, such as Chiari Malformation, POTS, OI or other autonomic nervous system failures falling under the category of dysautonomia. Having a tethered spine, cognitive impairments, Occipital Neuralgia/Migraines, Trigeminal Neuralgia, TMJD, Spina Bifida, Chronic Fatigue, and Fibromyalgia are all associated as well, among many other issues. There are two scales to help you figure out at home if you may need to bring Ehler-Danlos up with your own doctor; one is called the Brighton Scale, and one is called the Beighton Score. Either one is accepted as the standard for diagnosing the disorder in the absence of genetic testing, but it’s easy to measure both scores at the same time.

BEIGHTON SCORING SYSTEM for Ehler-Danlos Syndrome:

It is extremely important to know if you have EDS, especially if female, one of the reasons being it can be an issue with pregnancy. In addition, it affects your connective tissues, which are not just in your joints, they are in your organs and throughout your body as well. It’s also important to know that if you suspect you have it, the treatment is not much different for EDS type III Hypermobility (the most common) as it is for severe Joint Hypermobility Syndrome, so even if you can’t get a formal diagnosis of EDS, insist on them writing the severity of your JHS in your medical charts for a more discerning doctor to pick up on later, hopefully, and then do physical therapy for hypermobility, but carefully and only under the guidance of someone who knows how to improve muscle tone around the joints without stressing them too much or risking them subluxing or slipping out!

There are 6 main subsets of Ehler Danlos, but even more variances than that exist within the condition when you get really technical. Some are much, much worse than what I suspect is going on with me. I have a friend I greatly respect and admire, who actually managed to acquire not one, but two forms of the rare disease in utero.

Here are the various types of Ehler-Danlos Syndrome:

The actual meanings and specifics of all these diagnoses is variable and too lengthy to go into detail on here, but for more info, feel free to head over to EDNF.org (Ehlers Danlos National Foundation) which has a lot of good info for patients and physicians alike. I am still trying to hunt down a doctor who will agree to genetic testing, but in the meanwhile I am doing my best to learn to avoid subluxated joints and painful dislocations as much as possible.

“More than 350 million people worldwide suffer from a rare disease. If a disease affects fewer than 200,000 people in the United States, it is considered rare. There are currently about 7,000 rare diseases identified worldwide, and approximately 80 percent are caused by genetic changes. These diseases are often chronic, progressive, complex, life-threatening, and affect the quality of life.”

I was born premature. For many reasons that were unavoidable at the time, my mom was on medications that are now considered seriously unsafe to a fetus and one in particular which has been straight-up recalled by the FDA, called Terbutaline, to keep me inside, and to keep her alive while medical emergencies kept cropping up. It was not a fun pregnancy for my mom and it was her first, and I think in the disaster of incompetent doctors I just got lost in the shuffle. I was pronounced a healthy baby with a minor heart murmur and bi-lateral hip dysplasia, and no one even noticed the Spina Bifida and hypoplastic vertebrae. I can’t blame them, when you’re contemplating heart surgery on a preemie infant, I suppose there are enough things to worry about without actively looking for more issues. Now it is tested for regularly, and monitored for in families with a history, though it is not entirely clear if genes, environment, or more likely a combination of the two, are to be blamed for it’s appearance in a fetus. However, we do know that it happens within the first four weeks, and the risks of having a baby with Spina Bifida if you have it yourself are much higher than for someone without it, but are also greatly reduced by taking 4mg of folic acid a day. Doctors vary on how long a woman should be taking the folic acid for optimum results, but all say a very minimum of a month, some say a year, of taking a regular dose of folic acid and other prenatal vitamins before attempting to become pregnant.

My father has Spina Bifida Occulta as well, and the same cracking joints that get stuck, but he is the opposite of flexible. I, however, was a gymnast nicknamed “Rubber Band Girl” by my teammates because I was so damn bendy. My younger brother has Spina Bifida too, and is also still insanely limber and never ‘grew out of it’ like he was told, and has joint pain as well. I was much more active than him as a kid, involved in gymnastics, swimming, ballet, tee-ball/softball and just about anything else I could attempt my hand at.

My pain has skyrocketed uncontrollably throughout young adulthood, especially since my car accident, but before that I had pain that I thought was either normal or “no big deal” (although you could see by my declining test scores throughout middle and high school that it was a big deal) and tried to play it off in a variety of ways. I especially remember that getting picked up as a kid was something I dreaded with the wrong person, because too much digging in my armpits or hips or back was insanely painful. As a child and throughout being a teen, my hip used to pop out while I was lying in bed, and I would be frozen, silently screaming like the wind was completely knocked out of me until I could force it back in. But that was “normal”?

The Spina Bifida pain presented itself mostly as tailbone pain and low back pain throughout my childhood and teenage years. I could do more sit-ups than anyone else in a minute, in my entire grade, boy or girl, but I had to be on the cushiest stack of floor mats or I couldn’t even do one. Laying on a hard surface would make me sweat with pain. Again… why that was normal, I don’t know. Anything that requires lengths of sitting or lying on something hard left me wondering if I was going insane, or if I should tell someone how much it hurt. It took until last year to get a formal diagnosis of Spina Bifida added to my chart, but I am so glad I know now and that I know to seek medical advice before becoming pregnant, if that is an option for me at all in the future.

From my rambling about it, I’m sure you gathered that Spina Bifida is one of these rare diseases as well. It is widely screened for now, thankfully, and there is even a surgery that can be done in utero to close a hole in the spine of the fetus if the problem is very severe. People with Spina Bifida who are looking to conceive can obtain genetic counseling to see what their chances are of birthing a non-affected child.

I had planned to write more, and maybe I will come back and do some more work on this post soon, as I just learned that this entire coming month is dedicated to raising awareness for rare diseases.

Related Media for Further Research:

http://globalgenes.org/rarelist/ – A comprehensive list of almost all known rare diseases, with links to organizations where possible. This website also has toolkits for various life situations that face patients and caretakers, as well as packets for starting a fundraiser for rare disease. They have quality images for spreading awareness through social media as well. Most of the ones I used in this post come from their press release packet.

EDNF.org (Ehlers Danlos National Foundation) has a lot of good info, for patients and physicians alike. It also includes a section on how to find a diagnosis, and many of my friends have stated that emailing the organization can help push you through to an interested specialist as quickly as possible.

http://chronicillnessproblems.tumblr.com/EhlersDanlosInfo – An awesome collection of information assembled by a fellow blogger. Incredibly thorough and way more in depth than my little synopsis! She also has a wealth of links and research included, which is nice for those of us who like to learn as much as possible.

http://www.spinabifidaassociation.org/ – For 15 years the Spina Bifida Association has been seeking answers, spreading knowledge, and connecting patients. This website has a great selection of information for patients, practitioners, and caregivers.

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Moongazer commented recently that it doesn’t matter where we are geographically, we spoonies can still find and comfort each other no matter where in the world we are, and I couldn’t agree with her more.

In fact, getting to network with people who live with and work around other health systems is beneficial to all of us. We all need to know what specific problems our spoonie friends in other countries have to face. None of us should have to fight the system alone. Ever. Together we can solve complex problems within our healthcare systems, but it takes a lot of networking and a willingness to learn what others are up against, especially in countries where it is very hard to have an invisible illness. I know it’s hard everywhere, but I also realize that I am extremely lucky to live in the US, even if it means I have to wait five years for disability to be approved, and my healthcare kinda sucks, and my pills are extremely expensive and the treatments that will most benefit me are either non-FDA approved (read: EXPENSIVE and hard to find and makes you look suspicious on your medical record), or they are off limits because of this crazed witch hunt involving chronic pain patients and opiate use. A topic for many more blog posts, for sure, but not the topic of this post.

Bottom line, others have it harder than I do by far. I don’t just mean that others are in more pain or have more broken bodies than mine, although that is also very true. I do mean that many fellow spoonies have no roof over their head, no access to the internet, no support networks, no disability to even try filing for, no access to any treatment or meds, and often no access to diagnostics either. The minor annoyances in my life, like not being taken seriously, is a major roadblock for someone who still needs a diagnosis, still needs at least one doctor to take them seriously and at least try to help them. What about places where new chronic pain research has not been circulated? So much of our knowledge of where the pain comes from and how real it is have changed, but without the benefit of that knowledge, many suffer inhumane hospitalizations for psychiatric disorders they do not have.

Moongazer’s sweet comment also reminded me of how my psychiatrist asked me if I knew where my blogging family lived and I looked at her like she was the crazy one, but the question also caught me off guard; I felt suddenly so defensive of all of you. We are not some mass hysteria, thinking everything is a conspiracy and no one in real life understands us. Instead it is more like huddling together for warmth with people I am actually proud to call my family, only on the internet. It is a chance to read about others who handle pain differently, to get to know them through their clever words and their important stories. It is a chance to comfort those who are newer to the chronic pain community, and reach out to people who I have admired as writers for years. Who could pass that up? Not I!

Why does it even matter? I have friends that live right down the block that I talk to way less than you guys! I also talk to my family less than I talk to fellow spoonies. I don’t mean for that to sound sad or complainer-y, but just that it is so amazing to have contact with a vast array of talented, witty, and inspirational individuals who do not force me to justify myself and who accept me as I hope to learn to accept myself.

I was very lonely, I won’t debate that, but I didn’t come here specifically to meet new friends. In fact, I thought I would be the worst whiner, off in the corner, unable to meet anyone because I was too bitter and angry. Being around people who understand has washed away the empty, bitter angriness, and replaced it with joy and determination. That is what my blogging family means to me, and so much more. I am beyond grateful for your support, patience, and kindness as I work through things that many of you have figured out long ago. It is such an honor to be allowed to learn from and reach out to others who live with chronic illness or chronic pain, and to see firsthand how strong we truly are together. ❤ ❤ ❤

Though I have to admit, now that I’ve been asked, I am curious as to how far apart we are spread. I would love to know what state or country everyone is from! I’m a proud resident of Oregon. The Pacific Northwest is beautiful and won’t let me leave for too long, though I’ve lived in Massachusetts and Indiana as well. I was born here and I love this state!

Drop me a quick comment and let me know where you live, I can’t wait to see where we all are from.

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Apparently my injury from my fall was visible in more way than one, which I am glad I know now. There is a lovely hematoma on my left ribs, and the radiologist is still not sure if I didn’t crack my orbital a little, but nothing more than a hairline fracture if at all. They might call me back for a CT scan this week because of the pressure and migraine I have had. There’s a lot of stuff up there that could be some kind of issue that isn’t visible on X-Ray.
Who knew you were still at risk for weeks after a concussion?! Not this girl.
I guess I am nowhere near the top of the learning curve here, which is okay. That leaves lots of room for improvement, and that’s hopeful.
My doctor recognized how stubborn I am about pain and going to the ER and gave me her cell phone number instead so I can text her with new problems and verify if I actually need to go get help, and so they can call her from the ER and figure out what to do with me. She even gave me painkillers without my asking! They absolutely don’t do anything for the pressure/migraine/spinning/eye issues, but help a good deal with the hematoma pain, although to be honest, I could probably continue to tough that out without anything, but on top of the migraine it’s hard to even smile without a little help. I had to do laundry and ended up sitting on the concrete for twenty minutes, everything spinning, trying not to panic or sob because no one else was home. I’m pretty sure I even put my face on that dirty floor, hoping I could cool off the fire in my head, but don’t tell anyone.

When I went to get my X-Rays and told the girls checking me in what had happened, how long I had held out before going into the doctors for my pain, I ended up with three techs clucking over me because just the twisting and odd movements I had to do for skull and rib X-Rays left me breathless, sweating buckets, and with ice cold hands, arms, feet, and legs. I get so embarrassed when my autonomic issues take hold, and I know I can’t stop it unless I sit or lie down for an extended period of time. I try to push through it, knowing that I never have the time to lie down like that. Soon enough I was back in the car, and my doctor called me with the results from the lab before I even made it home. She is awesome, did I mention that?

I have had zero energy, either cognitively or physically, lately, but am in a much, much better mood. What I have learned is that though my mood plays a role in the aggressiveness of my pain, or my perception of my pain, one of the two, mood doesn’t seem to have much effect on measured pain levels for me compared to the severe level of agony I experience during a flare. Being in a good mood despite severe pain is somewhat of an oxymoron. But it is possible, just not with the expectation that we will be happy 100% of the time.

Having a hematoma this large is a new experience for me, especially in a place you can’t avoid moving and twisting just to roll over in bed! Oh man, does that hurt! And it rolls around my ribs so that the pain can be in my back on just one side, or on both sides, or seeming to emanate from my spine itself.

Still wish I knew what I hit when I fell. Then again, I still have my eyes and my teeth, so I will settle for that being a victory considering such an epic fall in the pitch dark!

The lesson in my story is pretty simple, and something I feel most people have a better grasp of than I do: I am still supposed to go to the ER for trauma, even if it doesn’t directly seem to hurt. Even if it’s all too easy to blame fibro or CFS or spine damage and suffer in silence (well, not silence… but as far as my primary care knew), rather than go to a doctor. Especially with head trauma, what you see is not what you get!

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Currently I am working on not thinking things like “I want to disappear” “It would have been better if I had never existed” and several others super-negative self-reflections. I had stopped doing this, years ago, and thought these passive suicidal thoughts would not follow me into adulthood, but that wasn’t supposed to be my story, I guess.

When I am this miserable and at a peak flare up, and have dealt with weeks of unbearable pain already, it makes it so that it takes hours just to write one tiny post, my eyes at tiny slits, neck stuck in an odd position, lights and sound being overstimulating and making me feel like ants are crawling all over me and I’m going to have to get up and run out of the house naked if it doesn’t STOP.

And then, joy of joys, this new and beautiful cluster or occipital headache that will not quit. All I can say is, they aren’t commonly referred to as the suicide headaches without good reason.

I am surrounded by things I use to ward off pain, from rubs and tinctures and vitamins and supplements to prescriptions, massage neck rest, crystal piezo pen, DaVinci tool, back buddy, steaming mug of chai replacing my usual coffee, extra ginger and cinnamon, please. There is a bag of tart cherries next to me, a electronic devices all in one place, my contoured foam pillow, heating pads (yes, TWO), and a blanket all within easy reach too. Even some water and a raw food bar just in case I feel a sudden ability or need to put food into my body.

One whole side of my face throbs and twitches with this headache, it feels like snakes writhing around under my skin, biting and pulling apart my muscles and ligaments in my neck and the base of my skull, one snake curled around my eye, with his teeth sunk into my temple. Sometimes they migrate, to the strangest places in my body, if I move the wrong way or don’t rest often enough. The worst pain is a high spot on the back of my head on the right side that sends pain down my arm, into my face, up my skull, around and in my ear, teeth, and jaw, and straight down my neck and shoulder into my low back, causing my legs to just give out from underneath me with the aggressiveness of the pain. So I just keep repeating that i want to disappear, knowing I shouldn’t talk like that to myself and doing it all the same because it’s true. There is no happy thought for this kind of pain. I thought the broken rib feeling I have been dealing with for two weeks was bad, and that is not gone at all, but this is so, so, so much worse. It makes me want to rip my face off.

Here’s a pretty good illustration of that, and I wish I knew the artist:

I wish I could just take it off.

What do you guys do when you find yourself talking negatively to yourself or being unhealthy even though you know better? I try not to feel even more guilt about it, because I’m not gonna be perfect at managing this, ever. It’s not that kind of pain, it does not want to be “managed”. All I can do is hold on through the worst storms, and keep aiming for a month that is better than last month and the month before that, and hopefully when I look back, each year will be better. But right now, there is nothing better about this. There is only beautiful, high walled, fiery, unmoveable, vast oceans of pain. And I am out there, drifting in it. Just pain. It hit so suddenly, I didn’t have time to meditate, visualize, stretch, or treat it. What do you do when your doctor won’t treat your breakthrough pain or flare ups or even regular pain, you really don’t want to kill yourself, but you find yourself thinking about it because it would be nice to get away from the pain? I’m not this upset unless I’m in this much physical pain, I wish my doctors could see that first comes the pain, then comes the much more severe than usual desperation, anxiety, depression. It would be nice to think positively right now, but I’m not sure where it would get me, you know? Nice thoughts don’t make the pain better and I already took care of myself to the best of my physical abilities and it’s not enough. Berating myself for not thinking positively definitely doesn’t help. I just hold on, I guess, and try to not worry too much about the dark places my mind is going, knowing full well I don’t have the ability to act on those thoughts. This is just not… healthy. Not ideal. Not okay. I wish I could get the treatment I need.

What do you do when your pain makes you feel like you’re losing it? I am out of ideas, and have so little energy to try anything new that I almost feel stupid asking. Somehow I gotta get through this one, though, and I don’t know how.

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With a chronic illness or two (or five), it can feel, especially at first, like all mental growth and development is in limbo, that it is all so beyond you. Your ability to focus, care, be motivated/inspired, or be fully present in life is even suspended, and it takes a huge amount of effort to immerse yourself in any part of your day, from work to free time, pain can be so overriding that it even becomes difficult to focus on your significant other’s needs like you used to, or even to be aware of them. You feel terrible about these things, we all do. No one likes to have to compare our old selves to our new selves post chronic-illness.

And I respect that, very much so, and do not want to take away from the reality of those moments. Though I often try to emphasize the positive on this blog, I will be honest, there days when I have to write the positive message I want to say over and over again until I really believe it, or skip the “fake it till you make it” approach and wait to post something until I feel less cynical about life. I am often stumped by my own depression, my own guilt. My illnesses and pain often overwhelm me and leave me so hopeless I can’t even bear to write about it. I never want to trivialize the absolute difficulty of living in constant, unrelenting pain that threatens to burn you alive with its intensity. During times when I feel that terrible and dysfunctional in every way, I tend to shut down, pouring my energy into worry, fear of rejection, and often anger, among other negative emotions. I do not believe it is anyone’s “fault” if they feel upset about something. There is always, always, always a reason for why people feel and act the way they do, and though that may not excuse behavior that is harmful towards others, it also provides a framework for starting to understand those in all stages of recovery or maintenance with a chronic illness. Just because some of us happen to be really good at dealing with pain, and some of us do not handle it as well, does not make those of us who are struggling any less worthy of love or admiration for where we are in our life and what it has taken us to get there. It also does not give someone who is in a better place mentally, or who feels like they are in a better place, the right to demerit someone who is just starting out on this journey, or someone who is picking themselves up from the depths of hell for the 42nd time and trying again, or even someone who isn’t yet aware of the path in front of them and can only focus on their own misery all of the time. These are all stages of the same state of existing and trying to thrive with a chronic illness. We are no better or worse than anyone else in pain, or bedbound, or learning to walk again, or even than someone who has given up, spiralled deeper and deeper into the sadder side of illness. No one wants to suffer. We were not born aiming for misery. At no point did someone walk up to us and sell us this illness, we did not choose it, we would do anything to be better, and many of have done everything. This is hard. Bottom line. You are allowed to have days, weeks, months, years, where you feel like a failure. You are allowed to grieve, hurt, or be miserable. You are allowed to scream, cry, or feel the hollow, numb, hopeless apathy wash over you for a time. These are your emotions, you are supposed to feel both highs and lows, and all things in between.

No one gets to tell you that you aren’t dealing with your illness in the best possible way for you, even your doctor’s advice needs to be taken with a grain of salt and a deep knowledge of what is right for you, in a long-term sense. Listening to your intuition is confidence boosting, I promise. We are all doing our best, even if the whole world makes you feel like a scab on a wound stuck on the back of society, that is not our fault, and it is not forever! Nothing is worse than being stuck in the negative side of emotions, and on top of that, also feeling guilty for your own disordered thoughts.

Dear spoonies, you are doing the best you can. Please, please, try to take some comfort in the fact that there are people out there who know how hard you’re working, how every single day is a massive achievement, and how determined you really are underneath the tears, the desperation, and the bad habits that will not be dealt with right now.

You don’t have to think positive all the time. You can be loved anyway, no matter what side of the emotional spectrum you are currently leaning towards. You are still worth just as much when you are sad as when you are happy, so please don’t feel like just because you are depressed, you are worthless. Depression is a part of this. A study from 2008 at Northwestern University shows how pain actually changes our brains, and it takes some time to adjust to that change and figure out how to work around what you have been given. We are all different, there is no formula for everyone to achieve optimum happiness, and anyone that insists there is might not be as brilliant as they appear.

CHRONIC PAIN HARMS THE BRAIN

In a new study, investigators at the Feinberg School of Medicine have identified a clue that may explain how suffering long-term pain could trigger other pain-related symptoms.

Someone who tells you that it is possible to be chronically ill your whole life without dealing with bouts of depression, obviously hasn’t suffered any major trauma in their life, either that or they are in some deep denial. Whatever the reason for their skewed logic, don’t listen to that crap. Illness can be traumatizing, but you are safe in thinking your thoughts, no one has dominion over what you feel, you are in charge, you are allowed to experience the ups and the downs in life without censorship. Just in case you don’t have a safe place to be yourself in all of your disease’s ups and down, I am always honored to listen and encourage. No one should ever have to do this alone. Chronic illness is an adventure best enjoyed surrounded by those who understand and commend your quiet everyday courage just in getting up each morning to a body that does not behave and a life that is more stressful than most. I admire each and every one of you, even if we haven’t met yet, I know you’re trying and I’m rooting for you.

Beautiful spoonies, you all fight so hard, and that makes me so proud to be a part of this wonderful and supportive community. Even if we’re depressed from time to time, we are still fighting to be here in a meaningful way, and very much deserving of finding that. ❤

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Wow, I sure feel like an idiot. Also I’m miserable, so whatever lesson I was supposed to learn, I think I got it now, universe! Seriously, you can stop!

Until last night around midnight, I had not slept for 68 hours. At all. I don’t usually end up forfeiting more than one night at a time to Chronic Pain, but this time she went ahead and took two full nights from me, and then some. Bitch. Anyway, I was hurting from trying to have one of those as-enthusiastic-as-before-I-got-sick nights of fun with my boyfriend, but ended up accidentally injuring myself absolutely everywhere while we were at it. Waking up a couple hours later on Sunday, I realized there was no way I was going to be able to get out of bed at all unless I got up right then and there, so at 5 am on Sunday, Chronic Pain began her longest winning streak against my sleep since the car accident.

I don’t remember everything from this entire time period, and you can kinda see why in the picture!

I know I laid down to go to sleep both nights, but that both nights, nothing happened, so rather than stress and get frustrated in bed, I got up and paced around the house, smoked a cigarette, drank a glass of water, wrote in the hard copy journal I sometimes keep, did light stretching, self massage with the DaVinci tool and the back buddy, and ten minutes of breathing. Still awake. Okay. Rinse. Repeat. Rinse. Repeat. Damn it, sun is shining, guess I am up for the day. Same thing the next night, only I was in even more pain and way more loopy, and my limbs were shaking and sore and muscles all over felt torn and limp.

I was wall-walking, which is how I navigate my house when my balance and motor skills start to go, or when my vision is not what it should be. Unfortunately I had just moved a bunch of furniture earlier in the week to create more open space in the living room for my business partner and I to actually get some work done and set up the play pen for her little boy. Instead of guiding myself to the couch with familiar furniture, I ended up with one leg collapsing out from under me just as I took a step, then realized I didn’t have anything to grab onto. So my nose grabbed onto the side of a table or just the floor, I’m not quite sure, and I blacked out for a second (actually have no idea how long I was out…), came to on the hardwood floor in my living room, close to the couch, but not close enough, and realized that my hand which was cradling my throbbing nose was full of hot liquid. Shit. Shitshitshit. “Chris! Hey… honey, can you help me?” I remember calling loud enough to wake him up as I made my way towards the bathroom. The bleeding took kind of a while to stop, and for obvious reasons after knocking myself out like that, I couldn’t go to sleep that night either. Yesterday crawled, I kept nodding off until my cortisol levels caught up with the day again around one or two pm. Coffee couldn’t help me, but I kept trying. I was so excited to sleep last night, finally, that pain be damned, I had already done an hour of relaxation including meditation, visualization, gentle yoga, and working on my breathing, so I was out cold in under 5 minutes after crawling beneath my pile of blankets. I woke up at 5 am to my right leg screaming painfully at me because all the blood had for some reason stopped moving around in it, and it was throbbing and immobile, and hurt like I always forget is even possible, all my toes twisted and curled up in unnatural positions. I had to stretch the toes out by hand after I dragged my dead leg over the side of the bed and mostly succeeded in not screaming when it hit the floor. Excruciating is the only word for trying to get blood pumping in a limb again once it has pooled there. So even last night, though I slept, I was up and down again.

And that’s what my black eyes and nose looked like when I woke up this morning, so I won’t be leaving the house for a bit unless it’s an emergency. Haha, embarrassing!

If this cycle is going to keep repeating as it has been for the last year or so, I am going to need some kind of pain relief, obviously, to make it possible to sleep during flare ups at the very least, so I can break the cycle. Being able to sleep is the only way to begin to crawl my way out of a severe long-term flare up. Haven’t I shown that I’m willing to try anything and everything, haven’t I given it all a real try? What works best should be available to me, but it is not. This whole demonization of opiates has hurt so many innocent bystanders, and it has hit the chronic pain community so hard that many of my friends who were on pain contracts and have been dropped recently have reverted back to unhealthy coping mechanisms and self-medication. After years of success working with their doctors they are being treated like junkies, and I think being treated like that actually produces more addicts than anything. Anyway, tangent over, back on subject: I usually (since the car accident anyway) cannot sleep at least four nights a month because of pain, and I have accepted and adjusted to that. Unfortunately it’s been more like six or seven nights just in January so far, and that is starting to increase my pain even more. This is one giant vicious cycle that I want out of so badly. I don’t sleep or nap during the day, it’s part of the mystery with my case, and it confuses my doctors a lot, but to me it’s just my personality. I also can’t “catch up” on sleep from one night to the next because sleeping extra hours equals severe pain that I have learned the hard way to avoid by setting an 8 am alarm, just in case I manage to sleep in that late. My schedule is as consistent as my pain allows and I thought I was improving, but this latest increase in pain and accompanying strange ramping up of other symptoms has left me concluding that was just hopeful optimism.

This week in particular the meds that are supposed to make me fall asleep and stay asleep are making me feel wired and wide awake, and the meds that are supposed to help me focus and get through the day are making me want to curl up in a ball somewhere dark and sleep it off. That makes it hard to want to take anything at all, the only thing that keeps me on my regular maintenance doses of everything and keeps me slowly decreasing the Lyrica is knowing how awful the withdrawal effects are on top of an already painful day (previous experiences where I thought I had taken my pills, only to figure out the next day, in extreme pain, that I had actually missed one or two doses, or accidentally falling asleep with nothing on board, or thinking that I was magically cured for a day and not taking my meds. Oh, how I have learned).

Lately my whole-body pain has increased, as have my migraines, and though I have met this change by continuing my small exercise regiment and getting up at the same time, eating healthier and limiting my caffeine and sugar intakes, it has just continued to roar brighter and higher, an ever-increasing, agonizing bonfire blazing across my brain.

I have found that beyond a doubt, not a one of my current meds helps with breakthrough pain or flare ups. and I have to wonder how I am supposed to be increasing my activity levels and taking on more and more responsibilities while I am just getting worse and there is absolutely zero relief from the resulting negative impact on my health. Being in so much pain that I can’t even catch an hour or two of sleep is just unacceptable. I’m not headed for better health by pushing myself like this, I’m headed for new scary/weird symptoms, extra agony, and perhaps even total physical collapse.

I have been saturating myself in a mixture of all of my topical treatments combined into one super-pain-gel, with extra crushed up arnica tablets, drops of essential oils, high CBD/CBG hemp oil, castor oil, and everything under the sun that is considered a pain-killer or anti-inflammatory. I whip this concoction up often when I am in more pain that usual, but this time it is not working as previously, so I called up my compounding pharmacy to find out how much ketamine they can cram into one of these creams for me. Turns out, three times more than is in there right now! I am so relieved, that might actually help me! They also add something called LDNs to topical treatments, and if anyone has any experience with LDN’s either topically or orally, for chronic fatigue or fibro, please, please, PLEASE leave me a comment with your take on it! I am fascinated.

My boyfriend actually found the article about them as relating to fibro pain, so thanks to him at least I have something new to try that doesn’t necessarily have to be ingested (my kidneys need a break!). I am really encouraged that he researched my situation enough to find that potential solution! On the other hand, there is still no verbal reassurance from him, no open communication, no emotional honesty from him, and no two way conversations. Just…. Trying not to be so upset about how I think he feels towards me and focus more on how I feel towards myself. In the end, in order to be in a true relationship I must have the strength within me to keep trying to thrive, all on my own. My strength doesn’t come from him. Even if it would be so nice to have his verbal support, not having it won’t kill me. So progress has been made on my side in the relationship, and some progress and gestures have been made on his part. I have been kind of cool and reserved towards him, and that’s because in between my own bouts of emotional honesty, I have noticed how there is never a reply from him, never any comfort besides physical, and unfortunately I can’t always tolerate back rubs, hugs, and tilting my neck or moving my jaw for kisses. Plus, with all my abandonment issues and PTSD, I have to be careful to disengage from my most co-dependent behaviors, such as changing my emotions to suit his mood. The goal is to do this without hurting his feelings, but it’s rough. It’s hard to explain to him why our relationship is less healthy than is ideal, and it’s hard to keep pushing for what is better for both of us. I got us into this mess by dragging so much baggage, trauma and emotional damage from my childhood unknowingly into our relationship. He did not choose to be in the role that he is in now in our relationship. I just keep talking and hoping some of what I say is making it through and hitting its mark, because I have no way of knowing for sure. Sometimes my own fears cause me to act out, and that seems to be the case here. The reality is that he does many small sweet things, he tries, he wants me to be happier, he wants us to keep working towards a better tomorrow. Even if he doesn’t know how to communicate it at all, and he doesn’t know how to say the words I need to hear from him, he loves me. There is so much room within that love that together I know we can shape our relationship into one that is truly honest, content, respectful and forgiving. We will get there, that goal is a lofty one even for a couple not dealing with Chronic Pain. On this issue, Pain can kiss my ass, that jealous creature is not taking any more people out of my life than she already has.

Right now I am at a cross roads with my life in so many ways. I find out in the next three days, hopefully, if I am qualified to stay on my mother’s health insurance. Super Stress! If not, I lose everything concerned with my health which I have so delicately balanced in my life right now; all my access to medications, doctors that I need to continue seeing, the teaching hospital, my psychiatrist and mental health care in general, and to top it all off, Fibromyalgia is not a covered condition under the state-run health insurance. Great. Fucking great. So there’s the cause of much of my anxiety lately. As usual I procrastinated, and as usual I didn’t have most of the information I needed when it would have been ideal to have it, but unlike usual, I didn’t let my ADHD and brain fog stop me from getting everything in on time, early even, and following up with them. I have sticky notes, alarms on my phone, tasks on ToDoist, etc, anywhere I can slap reminders to stay on top of this stressful issue. The idea of losing access to any quality healthcare is terrifying beyond words, I do not even feel capable of contemplating how that will go if I am denied.

Most days it is a major struggle to get anything done at all, and even though I have only been able to shower once every four or five days, I just keep doing the one or two tasks a day that I am capable of, and that has so far in the last month added up to a rudimentary business plan, a super organized list of links to wholesalers, ingredients, prices, as well as display and packaging ideas, and recipes for many of the products we will be attempting to make. Only the best and most useful will actually end up on our first line at the end of spring. So again, progress is happening, but it feels unfairly limited because of how little I can do at one time. The old me would have products done by now and ready to be packaged, she would have designed the logo, created a website, written ten blog posts and scheduled them out in advance, and started working on the final draft of the business plan. Unfortunately I am not the old me, and my current level of ability will just have to suffice. I know i can make it work, I just need to stay consistent. Having this driving focus on an overall goal for the future is helping me stay sane during this gnarly week of flare up, but it’s also making me a little crazy. If that makes sense.

I am aware that I cannot continue pushing this hard indefinitely, and yet I’m not ready to decrease activity. I have finally found a few passions left in my life, like painting, writing, helping friends during difficult times so I can be around when they are thriving again, advocacy, staying educated about clean eating and chronic disease research, designing, and starting our small business. I finally looked Chronic Pain in the eyes and told her off by doing things that are incredibly painful, and which take weeks to recover fully from, and enjoying them, instead of worrying about the inevitable fiery backlash from fibro and chronic fatigue and hypermobility. So even though the pain is seriously awful, I’m not finding myself ready to stop.

Maybe I’m just crazy. Maybe I’m being unrealistic and stubborn. Maybe this is false bravado. No matter the reason, I have tasks piling up that need tackling, and this business is no longer just an idea, it is happening, and so I have to keep pressing forward, pushing through the brain fog, this newest stupid injury, and the severe fatigue and pain, all in order to keep seeing the incredibly slow, but present, progress towards a higher goal.

I am slightly dismayed that throughout my life I have always wanted better and been willing to work on myself, but somehow measurable progress has still been so incredibly slow as to seem non-existent or even backwards at times. Even getting close to figuring out what is going on underneath the obvious is a long up-and-down journey that I am still on.

My one truth, and a major consolation lately, is that I have never passively allowed myself to suffer, even when I whine like it. I am always seeking some kind of alternative to my present situation, and I have nearly always achieved those goals. Often the changes were not positive like I intended, but instead were more closely recognizable as manifestations of the trauma sustained throughout my childhood. Basically, my reactions to the perceived ever-present dangers and perceived constant rejection from those around me are what have been reinforcing unhealthy coping, despite my best efforts. Knowing that puts some of the power back in my hands.

I am not a small child anymore. I can handle almost anything that is thrown at me. I am not helpless. I am not unlovable, my emotions are not disgusting, and I do not have to accept unfair criticism from anyone.

Phew, I guess I had a lot to get off my chest after not really blogging for so long. Sorry for the length of this mess of a post! Thank you for reading if you made it this far!!! ❤

Even with two black eyes and a very swollen and throbbing nose, I refuse to quit. Bring it on, Pain. Let’s see what I can get done today, despite your ugly presence. Keep trying to stop me. I’m not scared of you. Eventually I will be able to put you in your place, but until then, let’s be very clear about something: I own my body, and you, Chronic Pain, are just along for the ride.

Having this blog and meeting so many strong and wonderful individuals who are not defined by their illnesses has changed me in ways I would not trade for anything.

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I just can’t get over how talking to a friend from the same small town I am from reminded me of being a child and hearing all the times someone told me to eat right and exercise. And all the times I blew that off and ate a cookie or smoked a cigarette or decided not to work out. What made me react to perfectly good advice like a dumb-ass? Who knows! Who cares, kids don’t do everything with the same logic that adults do (not to say that their logic is less! It can certainly be more astute sometimes) and that is behind me now.

As an adult who suffers from chronic pain and has been through almost every treatment and test and minor procedure to attempt to lessen that pain somewhat, and who has taken every pill and every supplement and every “miracle cure” and hoped so badly that something would work, I am finding that all I am left with are lifestyle changes. Fortunately, they are lifestyle changes I have wanted to make for a long time, but have not had the courage to pursue. That’s changing now, I’m starting to realize that yes, my body does hurt every second of every day, and yes, I can still be happy for hours at a time despite that.

Being ill has taught me that all those things we shrugged off as kids, all the health-class reading and the boring PE classes; that stuff actually mattered. What the hell, right?! In all seriousness though, that is really the end-all-be-all of managing my chronic illnesses and pain. I’m not great at always eating the right thing, and I sometimes skip sleeping, eating, and working out, because of illness, but in between not getting it right, I have to keep trying. I’m finding as time goes on I get better at certain things, but my progress is almost so gradual that I miss it if I am only looking at the ground gained from one day to the next, instead of the big picture. Looking back I can tell that certain things have shifted, for good. For the first time since I was 13, I am avoiding frou-frou coffee drinks, and there is usually NOT ice cream in the freezer these days! I have been craving things like salmon, cabbage, tart cherries, and homemade low-sodium pickles. Weird, and no, I am not pregnant. 😦

Some of the other changes I have made are slowly incorporating a regular amount of movement into my days. I now know that I feel worse, not better, if I sit around all day long. Even if I’m not up to working out or exercising, I have to keep moving throughout the day to avoid making my symptoms even worse. When I am up to it, I split my work out time into two or three 10-15 minute sessions of stretching, very gentle yoga, and super light arm and ankle weights. I focus more on my breathing than anything, and at least six times a day, no matter how awful I feel, take a few moments to regulate my body by breathing deep and slowly into my lungs, focusing on my belly rising and falling instead of my chest. It helps with pain to breathe like that, but it also helps long-term too, by forcing more oxygen into my tissues, which is a major problem for people with fibro.

My morning coffee drink is no longer overrun with fake, bad-for-me ingredients and now I add organic milk and coconut sugar (try it!!! it is the only low-glycemic sugar that I have actually enjoyed more than raw can sugar because it isn’t quite as sweet but is full of flavor and essential nutrients like zinc, potassium and magnesium!). I do not bake as often which cuts out most of our sweets around the house, and I try to buy only whole foods. Recently I have begun to include a 100% fruit smoothie in my day as often as possible, instead of the dairy based smoothies I used to make. I take probiotics every night with dinner, and I will never stop taking them.

Most exciting of all, I have begun to get off of Lyrica. This means so much to me, I can’t even put it in words. I wish someone had warned me that women of a child-bearing age have no business being on Lyrica if they actually do want children. Which I do, and have for quite some time, and would have caused me to find something different to take instead of the Lyrica, had I been warned. Lyrica causes some severe neural tube defects, often leading to miscarriage or at the very least developmental delays. I am not dooming my future child because of my inability to deal with the severe pain I am in, it just is not how this is gonna go. So starting December 26th, I have gone from taking 3-4 of the 150 mg pills every day to only taking 3 of the 75mg! Down more than half from my old dosage, and ready to start taking just 75mg every twelve hours and seeing how that goes! I kept a diary for the first week as I started to get off of it and then trashed it because every day sucked, for the first two weeks. I allowed myself to level out to a place where I wasn’t throwing up every day again and didn’t have the pounding, blinding migraines and gnarly headaches, skin crawling and lots of increase in my neuropathy and radiating nerve pain from pinched and torn discs in my spine, but I’m gonna see this through this year. I do not want to live with the loss of short term memory and feeling of complete apathy that washed over me while I was on Lyrica. And yes, that means those things, my emotions and feelings and everything I had been shoving down successfully have bubbled to the surface, and I have been forced to actually deal with my emotions instead of pretending they don’t exist. This is all good, I believe, but it hurts, and it’s been rocky for both me and my partner. Poor guy has seen me go through every shade of depressed, hopeless, negative, manic, hyperactive, over-sharing, impulsive, and mostly whiny that I am capable of. He loves me still, so I think he’s a keeper! 🙂

Other weapons in my arsenal right now include affirmations, journaling with an actual pen and paper, being honest with myself and the people around me about what I’m going through and what helps vs hurts, and remembering that the way I feel detoxing is not the way I will feel forever. I just have to keep looking forward, and keep making these plans and dreaming again for the first time in ages.

The longer I have this much pain and sickness every day of my life, the better I learn to work around it and deal with it naturally or at least work with my body instead of just suppressing its natural instincts. I have realized that big pharma has only so much to offer me, and in many cases it isn’t worth the cost, both literally and figuratively, of taking a drug that only masks symptoms instead of treating the root cause. I know I’m not the only one who has really struggled going full circle from all-natural, all-homeopathic remedies as a young adult, to taking handfuls of pills every day a few years later, and back again to attempting to distance myself from harsh medications with a meditating, herbal-remedy-taking, eating-right-and-exercising lifestyle. Not that my doctors ever told me not to eat healthy or not to exercise, I’m just saying that offering a pill was usually their first line of defense. Then, when that didn’t work they would tell me to walk it off or to learn “self care” which I did not even understand a little bit at the time. It made me angry (to put it mildly) for over a year. Now I just gotta laugh, because I literally say to my friends and my boyfriend at least once a day “oops, I’ve been sitting for too long, I have to go walk around the yard or stretch now so I don’t get worse,” and I have noticed so many good changes in both my mood and my body as a result. Not that my symptoms are diminishing noticeably or that I believe I can be “cured” by my renewed interest in healthy living, but it is honestly the best and most hopeful treatment I have tried since receiving my first diagnosis over a year ago. Hope is everything when living in such overwhelming pain and with so many other debilitating symptoms running the show most days.

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I hope you all had the Christmas that you were hoping for, and even if you did not, I hope you found something in these holidays to be grateful for no matter what else is going on. My Christmas was full of many things, one of which was love, the other main component of which was pain.

I tried to write this post before I took some real painkillers, and whoa, I am not proud of the original version, but it does convey accurately what living in non-stop pain is like, so it may yet be posted, despite my embarrassment.

Right now, instead of salvaging/editing that previous documentation of hopeless levels of pain, I am going to talk about why it matters that we keep track and research, why it matters that we keep searching for hope in any form, and why it matters that we are able to openly discuss pain with people who are educated about it. Not very long ago, less than two hours, I was sobbing uncontrollably every ten or twenty minutes, unable to walk, unable to shift to a position in bed that would alleviate it, unable to sit at my desk or concentrate enough to talk to my boyfriend at all. So I am grateful, very grateful for painkillers, painkillers which I have kept in a dark place hidden away from everyone since around last time this year when I knew I was not going to be seeing the same doctor any more and that meant I would probably lose access to much-needed medicine that helped me to function just a little bit. And I was right, the next guy was a complete asshole, and he basically destroyed my life in ten minutes because he was afraid to treat pain correctly. Thank you, fucked up system, thank you dick-hole doctor, thank you crippling grief for my boyfriend’s father and severe anxiety at the time that kept me from fighting back.

Even these secreted away painkillers are leaving me close to tears right now, precariously perched between a 7 on the pain scale, which is barely manageable, and an 8, which is less manageable. Earlier I was at an extreme 9, but refusing to give in. Getting just a slight reduction is everything in this game; I must remind myself constantly at the moment to accept that 10%-20% relief is still better than the pain just growing, spreading and getting brighter and sharper and more intense to the point that even my breathing was rationed out because it hurt my spine too much to flex with each inhale and exhale.

Nerd moment: I can accurately say that the pain pills decimated my pain, because the word actually means a reduction of 10% (deci-) or more, traditionally it referenced killing one person in every ten as a punishment for the group, usually in the case of soldiers on the losing side.

For me personally, 10% is not enough for me to even consider something on sale in a clothing store, and it honestly wouldn’t mean anything to me if I didn’t know from experience that a tenth less is good news here. Very good news. It means the world to be allowed out from under the crushing burden of severe pain just for a little while. This is what a 10% reduction in pain means for me:

With that 10% reduction in pain, I have been able to make my own cup of coffee, walk up and down a half flight of stairs with a five minute break that I passed off as just a friendly chat with my downstairs roommates, and I popped some rolls in the oven that I made from scratch for Christmas and kept dormant in the fridge until this morning. Not much, not much at all really, but compared to having difficulty breathing due to pain, plus pain-puking which hurts even worse, it’s like magic. Doctors need to understand that non-stop chronic pain can kill, no matter what mood elevators I am on or regular dose of anti-anxiety medication, I am always shocked when the breakthrough pain and flare ups strike, often to the point of feeling helpless and hopeless against the severity of it. Sometimes depression is unavoidable at that point, at least for me.

Even if it only lasts for a few hours, the kind of depression that hits when I simply cannot cope with the level of pain that I am in, and when I know it will keep happening even if it stops for a little while, and nothing I try works even a little bit; at that point it is actually equal parts depression and desperation, and that is dangerous. It can be hard to keep a clear head when desperation enters the picture. With chronic pain, an episode of desperation and depression (both things most of us work very hard to keep at bay on a daily basis) can quickly turn into wondering why I am even here, wanting to escape my body by any means necessary, considering self-injury, wishing I could disappear, and a few times actively wishing to die without any set plans. I know many others spiral deeper than that through no fault of their own, and often because of misdiagnosis and mistreatment of their pain. Throw a little sleep deprivation/ painsomnia into the mix and a lack of understanding external support networks and all of a sudden you have a recipe for disaster. The data from a poll earlier this year, done by OHSU’s Dr’ Bennett, who is famous worldwide for his chronic pain research, found that a staggering 39% of Fibromyalgia patients have considered suicide. This is heartbreaking, terrifying data. More people with a disease that is supposedly not progressive or “dangerous” have considered suicide than those with Multiple Sclerosis or Lupus, which are traditionally considered much “worse” conditions to have. How awful.

Something needs to be done to provide these millions of people whose treatments are obviously failing them completely with a means of pain control that can allow them to see beyond this painful second into something a little better. I am so glad that I wisely hid away a few backup painkillers for breakthrough pain. Pain that my doctors keep insisting does not happen. I wish they could try living in my body for a week and then tell me how they feel about prescribing painkillers to chronic pain patients. We just need a break. I need a break in order to get to live my life a little tiny bit and most of all in order to get my shit together. When help is visible to me but I am not allowed to take it or ask for what I know will help me, it just feels like they’re being unreasonable and cruel. It’s terrifying to have your life in the hands of someone who does not know even a fraction of what you do about your body. It’s even more terrifying when the people who hold your life in their hands can be so openly hostile towards us when we need help the most.

We deserve so much better than the way that we are treated when we need help. I deserve better and more compassionate treatment than I am receiving and than I have received in the past. I certainly never want another pain patient to have to deal with the bully doctors I have been stuck with. I’m so tired of MD’s throwing their hands up in the air and saying they can’t help me when the answers are right there in front of them, and they’re afraid to prescribe it out of ignorance and pain-shaming. Whatever I was taking when I was still able to work part time in mid-2013, I need that all back in order to function and focus just barely enough to get to a point where my disability process is underway, my partner understands me and what’s going on with my body better, and all our paperwork is finally filed for all assistance agencies. Since 10% relief is a minor miracle during a flare up, I am no longer feeling desperation clawing at my neck, trying to burst out of my skin. But I know it’s lurking inside of me, waiting to strike in my next moment of pain and weakness. I know I can hold out time and time again, because I always have, but a part of me is scared of how bad I want out when it gets bad enough to make me vomit and sometimes go into shock.

I will do whatever it takes to keep holding on. This is just a bad day, it doesn’t mean I have a bad life.

Right now, I am looking to the humor and irony that coexist in how I have never been so uncomfortable in such soft, loose, comfortable clothing. At least there’s that! Amen for fleece. I never thought I would say that, but here we are, and I am wearing a fleece lined hoodie and fleece pants and it is pretty awesome.

🙂

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Pain is an evil mistress, she whispers horrible things in my ear, she tells me lies and laughs when I fall, tells me failure is inevitable. She enjoys murdering my dreams and trashing my plans, but I enjoy stopping her.

She doesn’t own me, despite what she seems to think. She can have her fun, but I will still be here when she leaves. Every time. Hopefully she’ll get bored of me soon. I’m terribly bored of her. I keep telling her to leave me alone but she is persistent. Even when I lock her out she finds her way back in. An uninvited house guest, she is bad news on every level.

She will wear you down until you consider giving in to her petty demands. Yet, every time I ignore her or say no to her, she gets weaker, her influence less severe. But it feels as though I will never convince her to leave me completely.

This is a battle of willpower between me and Pain, and I will win out eventually. She makes it such a struggle, but I am stronger than her. There are some days when she wins, I give up and she gets what she wants from me and leaves me shaking, immobile, desperate to escape my body. Other days I tell her off and sometimes it even works and scares her away for a bit.

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If you’re a guy, avert your eyes from the screen, you don’t want to hear about this, but ladies, it feels like I have a cheese-grater living in my uterus. HOLY CRAP.

Five days of my back going out or trying to go out, following four days of moodiness and binge eating, but preceding four days of this damn cheese-grater from hell.

But this week was not a waste, at all! I learned a little about how to make money online taking surveys and signing up for trials of things that forced me to devote a calendar entirely to cut-off dates. I managed to make almost $50 the first day, and there will be maybe a post about that and the lovely new mom, Amber, who introduced me to the right sites to start making money right away. Once I got the hang of it it’s even king of like a game. Except when my computer doesn’t work right!!! Then it’s just frustrating. 🙂

In addition to that, I went to the dentist, who lectured me for smoking and drinking coffee, then then the next day I went to the sleep medicine doctor, who also lectured me for smoking and coffee consumption.

Except the sleep doctor was awesome! She right away understood the difficulty and complexity of my case, she understood almost without me having to explain how my ADHD is permeating everything and maybe some of my fatigue and anxiety could be fixed with stimulants. Taking me off of them did not do me any favors in February. I just stopped functioning after the evil doctor from hell no pain patient ever wants to end up with told me he didn’t think I needed stimulants or painkillers of any kind because I was “perfectly healthy” according to him, even though I am far from either one of those words. Ugh. I gave up, I guess, I could have fought back, but no chronic pain sufferer wants any extra black marks in our book, doctors often hate us already based on a stereotype. The ones who aren’t openly hostile are often dismissive, cold, or attempt to come at the issue from one angle at a time, rather than taking a whole-picture approach. Then every now and again, you get a doctor like the one I talked to today, who are good at seeing problems and symptoms as linked together, who took my adrenal fatigue seriously even though it’s not a “real diagnosis” in the eyes of Western medicine, and who listens and who agreed on a whim to test me to see if I’ve ever had EBV, and had me tested me for B-12 and iron levels, which I am curious about since they got overlooked by the lab tech the last time they were ordered by a doctor. She strongly supports me going back on ADHD meds since I have failed all other treatments that might explain my seemingly conflicting issues of insomnia and extreme fatigue mixed in with brain fog, and ever increasing cognitive issues despite my pretty regular sleep schedule when I don’t have the dreaded painsomnia nights. And I’m on the correct treatment for my Restless Leg Syndrome, which is clonazepam, the one of my meds I currently have the most problem getting a hold of. I have to find a new doctor under a new health insurance plan I do not understand in exactly one month from today. My boyfriend promised to help me with some of this overwhelming stuff I can barely wrap my freaking brain around, but we haven’t had time for it yet, and he has no idea how embarrassing it is to ask for help in the first place, but that’s my problem not his. Still, I hate not being able to do complex tasks by myself. It makes me feel so weak and I want to learn to get around it, and the totally incomprehensible disability application is not just being pursued for my benefit, it is going to help both of us, especially if he can be payed for being my caretaker instead of doing it for free and possibly ending up resenting me for all the thankless work/burden of helping me. Over-thinking again, thinking in circles. It’s been an exhausting week and my brain is on overdrive, but out of gas. Yup.

I’m still doing affirmations, every week, at least two full pages. I cannot recommend those enough. You can feel so strong when you see all your personal powers and accomplishments written out on paper, and sometimes you don’t even know what it is you’re wishing for yourself until you go back and read what your heart wrote.

To top this week off in a positive light, my boyfriend and I did take some of the tiny settlement I got and put it towards a new vacuum at 75% off (its niiiice, on a good day even I can lift it and use it!) and I feel weird for being excited about a vacuum cleaner. Does this mean I’m an adult now? 😀

I also replaced my entire tattered, stained, ill-fitting wardrobe with comfy, slightly more put-together looking layering pieces and PJ’s even my severely fatigued self can assemble into an outfit! Victory!

For now, I’m just trying to ignore this cheese-grater inside me so I can focus on something, anything, out of the hundreds of things I can choose between that all need to get done.

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Does anyone else accidentally assign music to certain periods in their life?

I’ve been doing that since I was… little? Like 9 or 10 at the latest. It used to be that I would pick a song that reminded me of a feeling I had while reading a book. I was reading a book a day, sometimes more, and each novel got its own song, and those songs served as really great triggers to remind me of the entire plot/emotions of each particular book. I don’t do that anymore, but every month or so a new song or an old one will float into my subconscious and stay there, playing on and on. The one that keeps getting running through my head right now is Suffer Well by Depeche Mode.

Yes, I have always had this affliction for Depeche Mode, The Smiths, The Cure, New Order, Joy Division, Bauhaus, etc. Classic goth music. Sleek, a little shiny, still as awesome as it was the day they conceived it. Make fun, I do not care! 🙂

I have loved this song forever, well, since 2006, when I was still in high school. But last month when I started listening to music again, I found it on my ipod and Dave Gahan and I got reacquainted. We warmed up to each other pretty quickly, I remember how I felt when I first heard it, all my suffering was psychological and stress-induced at that time, and my take on it was more about my how the antidepressants I had just been told to start taking were fucking my body and brain up in ways I hated. Now, listening to it again, I found something much more positive in this track.

Dave Gahan sings “Just hold on…. Suffer well. Sometimes it’s hard, so hard to tell.” Amen.Yes. It is hard to tell. I feel like people should be able to see the pain in my eyes or all around my body like fire, but they cannot. Only if I start acting off or unresponsive does anyone catch on. I’m still not used to it, I don’t know if I will ever get over feeling like it is arcing off my body, surrounding me in a fiery red that people should be able to see from a distance. The pain is so overwhelming that I keep thinking it must be visible, somehow. I stare at my betraying limbs, wondering how something that looks normal other than the spasms and twitching could possibly cause so much pain, and how, how, how can it look so normal?!

Lately my body has been plagued by infections I am having trouble getting rid of, but which I refuse to treat with western medicine yet because I know my body will eventually fight them off, naturally and more healthily than with more pills than I already take. One after another the severe infections appear, and then when I think I’m done with them, the cycle seems to start over, all over my body. I make progress, slowly, until I get sick or knocked down by a flare up for a while and my immune system tanks. I know I will prevail if I take care of myself correctly. It’s a learning curve.

This is where I take a page from an excellent Depeche Mode song, and try to suffer well, since the suffering seems quite inevitable right now.

I will also strive to care less that it is so truly hard to tell how much pain I am in. I am smiling on the outside, so I cannot hold those who mean well around me accountable. That is what words are for, after all! Definitely something for me to work on in the future!

❤

I hope that if you are suffering tonight, you are enduring it well. I know that sounds odd if you haven’t been dealing with a chronic illness, but all my fellow spoonies will understand that I mean it with all the love in the world. Our suffering is not always avoidable, but we can choose how we handle it with practice.

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That feeling when you pour your heart out and the other person says not one single word the entire time, during or after. Yes. That.

Exhausted from wanting to hear something, anything when I am done talking, or while I am talking, or even two hours or two days later, but I have to accept that it’s not coming. There is no apology. There is no reassurance. There is no “I’m proud of how far you’ve come” or anything else that would let me know that “I’m ready to wash my hands of you” is not still the underlying truth here.

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Throughout life, my soul has somehow been buoyant enough that even when I am dropped from a great distance into an inky black ocean as vast as any imaginable, I may sink down and appear lost at first, but then gradually the plummeting stops and, finally, I slowly begin to float to the surface again, towards the air and the light.

Just knowing that the sinking stops, that it can only last for so long, sometimes that’s enough.

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I can’t believe it, I wanted quiet to soothe my pounding head and I actually got it…. for the next half an hour, my house is still and pensive, just waiting for our downstairs neighbors and their three year old and my boyfriend and his best friend to all fill the walls and ceilings with voices and laughter again.
Right now all I can think is that I need to find a way to climb out of this flare up. I am not living, stuck at a 7 on average on the pain scale for almost 10 months, a screaming 8 today, and that’s with all the medication I am allowed to take at one time and all the meditation, biofeedback, and visualization that could possibly be squeezed into my day. Doesn’t my agony warrant some kind of pain relief, or am I not deserving of that for some reason? This week has felt like I am being tortured, I cannot think to save my life. Even the weight of the hood that protects my neck from the cold wind is compressing my neck and causing fiery misery. I am mixing up words, my face is slumping on the right side, non-stop colored lights and floaters in my vision, my pain is bouncing around from minute to minute, from an 8 through a 10 and back down to a 7 again, but we will call it an 8 because I don’t like to admit it’s any worse than that. Totally random things, a thumb, then a shoulder, a kidney, then an eyebrow, a hip, an armpit, a shin, then my thigh, abdomen, toe, face, then my other shoulder. It’s just madness. The pain is making me feel crazy, like I need to rip the offending body part off of me, or like it is being ripped off. The headache is getting worse day by day, and at this point ignoring it is no longer an option. Not to mention I threw my low back out (thankfully not the most painful of all the times this has happened, but out enough that I can’t bend over and have to shuffle around with my knees pressed together). My neck/skull on the right side are in the 9-but-I’ve-learned-how-to-make-it-seem-like-an-8-because-it-never-goes-away range. It’s really that flu-like ache that is so all-encompassing, just like when a healthy person has an actual virus, that it’s impossible for me to go about a regular day no matter how willing I am to push through the pain aspect of my illness.

I want so much to be able to use my Saturdays for something fun. I feel so bad for my boyfriend who has been every bit as profoundly impacted by these conditions I am dealing with, and I feel particularly bad today that he had to run all the errands himself. I am not the same kind of girlfriend that I was to him before the car accident. Then again, I also feel bad for myself, never getting to go thrift store shopping, see my friends, take walks, practice yoga or make everything from scratch with love, and on top of that feeling like a burden. I miss being the old me. The competent, smart, working, thriving me that was stolen away when I started to get really sick and the chronic pain became constant chronic pain from which I could seemingly find no relief.
Don’t take your health for-granted. If you can walk up and down the stairs and you can do it without fear of terrible pain, you should celebrate that fact right now! If you can cook dinner or pursue your hobby or your career, hug those abilities close and thank your body for making it possible. If you work out, even once a month, and get sore afterwards, soreness is so pleasant compared to how I feel even on a really good day!!! Rejoice in feeling sore and that you can work out, because both mean that you are in much better health than I am.

Happiness is a state of being, but that doesn’t mean that having good health doesn’t help, and that it isn’t incredibly difficult (ah, but not impossible, and that’s what this blog is really about) to be happy when your body feels like it’s being tortured. I usually try to end all my posts on a more cohesive, happier note, but sometimes that’s just not a part of today’s story. Sometimes I am angry at the pain, and sad for what is lost, and there is momentarily no solace except that this too will pass. Tomorrow is always a new, hopefully better day.

Thank you to all the sweet and lovely people who read my rants, who respond when it is hard, and who reach out when they are under a mountain of health concerns of their own. I am so very grateful to the beautiful souls who have graced my life throughout sickness and health. Again, I’m not sharing the way my pain gets to me so that others feel sorry for me, I know my pain is not as bad as it could be and I know I don’t manage it perfectly by any means. I am sharing this because maybe someone whose sister, husband, daughter, wife, mother, uncle, etc has told them they are ill or in constant pain, and who nodded but had no idea what that meant, maybe they will read what it is like to be traveling in the land of chronic illness. Maybe this information can be used for education, to bridge the gap between the land of the healthy and the land of the sick so we don’t have to travel alone so often.

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